Why is there so much stigma around 'putting them in a home'?

[Sittingontheporch]

Hi, I'm a frequent botherer of this board, but have changed username so I can be free with details and not worry about outing myself. And because the subject is one that makes me itchy with shame and fear of judgment, which is kind of the point of my query.

I feel there's so stigma and taboo around an elderly parent going into a home, an implied failure or dereliction of duty from the children. Phrases like 'never put me in a home', or 'they put her in a home', or 'I'd never let my parent go into a home'. As if it's akin to prison rather than being a measured shared decision around a situation.

Or am I paranoid?

Our situation is that my mother has advanced dementia and low-to-no mobility. She lives in a four-bedroom house about two hours drive from me and my brother (and an ocean away from my other sibling). She has always said that she wanted to move into a care home nearer to the two of us. Then when my father died, she said she wanted to stay in the house for a year with the full-time live-in carer that we had employed for him (it went up to two in his last months). It's now six months on and we've reached a crossroads. The house needs urgent adaptations to make it safe, plus a whole load of other things doing as it's falling apart. She says she wants to move and is even excited about it, but I don't know if she fully understands how much space, familiarity and her possessions she'll be giving up.

The three of us are agonising over the decision in rotation, especially the one who lives abroad. We've also had lots of 'helpful' suggestions from her friends, some of whom have told us that they're very upset by the move. Things like 'have you thought of moving her downstairs', 'have you thought of moving closer to her' etc, etc.

I think they're projecting as they wouldn't want to go into a home, but they're currently fit and well.

I just wish it didn't feel as if society judges it so negatively.

Are you volunteering to look after your gran instead then? Homes don’t generally accept residents with capacity who don’t want to be there.

At £1800 a week, they do. @funnelfan

If she couldn’t afford it, you’d seek LA support. She wouldn't be able to choose the more expensive homes, but in any other home she’d get the same care as the self-funders.

If the LA didn’t think she needed a home, then they would fund up to 4 carer visits a day.

she’d have a financial assessment and would have to contribute unless income and savings were low.

All I'd say, OP, is do some research in your area around homes your LA do fund placements in so that when the money runs out they're less likely to move her.

Similarly, don't pick one that is £1600pw but more 'reasonable' so the money lasts longer and she is less likely to have to move.

OP - pp have already said about a time when people weren’t treated well. “putting in a home“ also has the connotation of a past time when people with disabilities were sent to an institution and never spoken of again. Implications these days that by placing them in a home you are abandoning them.

family members who are against the idea are welcome to step up and provide the necessary full time care. Otherwise, care homes are the right solution for many elderly people and I know if I could get my mum to agree to it she’d thrive due to the stimulation. And as a pp said, I could spend quality time visiting, not running round like a blue arsed fly doing necessary tasks. As it is I’m waiting for a crisis to force the issue.

I've seen very judgy posts on MN about social care being in crisis because not enough people care for their elderly relatives, and that people would absolutely care for their relatives when the time comes.

I think part of it comes from previous generations when a) there was more intergenerational living and b) life expectancy was shorter and people died of now treatable conditions....so now they live longer with many more complex needs.

And i think there is a naivety about just how much is involved in caring for someone. It's not just laying an extra place at the table, cooking a meal, doing the washing, shopping etc, taking them out in a wheel chair.

Often people need virtually as much care as a baby or toddler....but are fully grown adults. My dad needed care at the end of his life. If he fell, (even though he was probably only 9 stone) I couldn't lift him, I wasn't able to change a catheter or put a clean pair of incontinence pants on him. Even if you made him food he would forget to eat it. Then transporting him to various appointments. (One day it took 20 minutes for him to work out how to get out of the car)

My dad died when I was a teenager so it fell to me to look after my elderly nan who swiftly developed horrible dementia, I had no choice but to care home her and it was honestly horrific, I would rather die than go into one myself. I wish I could've taken care of her though, but I had no choice, I couldn't do it on my own.

I’m glad the GP was so helpful, OP.

I think there is a stigma. I think a lot of it is guilt and projection, and also in the case of people who have not had to deal with it directly, a lack of realism.

Sometimes a care home is the least worst option. My mother has dementia and has been in a care home for several years, they have all the necessary skills and equipment to make what remains of her life as comfortable as possible. And when she was still able to voice an opinion, she said she loved it there.

I did the same calculations as you did, and found it was cheaper for her to move to a care home, so her money considerably longer and Social Services only started paying for her care recently.

Fortunately my mother’s friends lived nearby and saw her deterioration first hand, so were in full agreement a care home was needed. We have no other relatives so I had no one to share the decision with - which in retrospect is a relief. It was hard making the decision but I had no one disagreeing or giving me grief about it.

(I always refer to it as ‘I moved my mother to a care home’ rather than ‘put her in a care home’.)

My parents have said similar. I've seen the toll caring for a parent takes on people. And my parents wouldn't want that.

@Sittingontheporch "Thank you again. It's all quite live for me because an old friend of mine visited my mother with her mother."

Oh my God. I had a long reply typed out. But then I saw this.... I can completely imagine what the feedback was from there and what your feelings were like.

it is awful when people get involved who are upset to see a friend or a loved one going into a care home. Unfortunately some people are just massively against it. No matter what quality of care is provided.

My mother has been in a private care home twice for respite and the care was excellent - though of course she has complaints re laundry etc.

But yeah, the opinion of people like your friend and her mum is going to be incredibly upsetting. Sometimes you actually just have to say "okay, they think I'm selfish - so what? Let them think that".

I have not exactly fallen out with some people, but I think there are some people who don't like me anymore. They were family friends and they felt that I could be doing 100 times more to avoid respite care for my mother.

I had a nervous breakdown over it all. Sadly in the modern age, those words don't seem to have the impact they used to have. I think some people think it means that you threw the toys out of your pram one day and couldn't cope but were back to normal the next day.

But actually it was a very long term damaging health problem.

And even then, when of some of these people saw me they said "oh but you look fine" so there is definitely judgement there. Unfortunately you have to shake off the judgement. Because this is your life - and speaking of someone who is single and childfree by choice, I was never prepared to sacrifice chunks of my life for anybody.

If that makes me selfish, so be it.

I no longer speak to anybody about these problems because I am sick to death of things being presented to me as being helpful.

you have my sympathies, but best advice I can give is "stuff what others think".

I have poa for both my parents so ultimately it was me that put my lovely mam in a home and not my dad. He feels guilty but I don’t, I had a duty of care to them both and my dad would be dead by now. She is well cared for, she’d have gone to dignitas or taken her own life but she ‘forgot’. I don’t want my kids to look after me either. Guilt doesn’t help anyone-so call out anyone that gives ‘helpful’ suggestions.

@DeltaAlphaDelta79 @Toddlerteaplease my mum always said the same - she's been saying it for years and years, after going through a very difficult time with her own mum. But now, she's suddenly started saying that actually she wants to stay in her own home for as long as possible.

At the moment she's perfectly ok and doesn't need any care. But the change in narrative has somewhat blindsided me, as when I was growing up she was so very vocal about wanting to go into a care home and not be a burden for me and my brother.

I can only assume that previously it seemed far off in the future, and now it's a bit more real (she's 82) she doesn't like the idea of it.

DH and I have two busy jobs and three DC and live an hour away. If she does need significant care at some point, it's going to be more of a moral dilemma than I was expecting

Please please ignore the unhelpful comments. We've been there. DHs mum became very unwell physically and mentally in her late sixties and had to move to a care home. This was after we tried extra carers coming into her own home and then a sheltered housing unit. She just needed 24/7 care. We had just had DD1 and a large mortgage and like most people in their late thirties nowadays we were just keeping ourselves financially afloat never mind one of us giving up work to be a fulltime carer. Anyway the amount of people who felt the need to offer unsolicited advice was unbelievable. I think it also stems from people having a frail unwell elderly grandparent in their life but that person is otherwise fine and has all their faculties and they can't get their heads around your situation being so different

Partly for older people, particularly from a working class background, there was stigma attached to 'being put in the workhouse' which later became public assistance institutions, which often then became
hospitals or care homes. My eldest elderly relatives are still just about old enough to remember these functioning and the stigma carried on even after they closed.

Partly amongst those who haven't had to provide care or deal with the reality of a very frail elderly person, they just don't have a clue what's involved. The comments are probably well meaning, but they're imagining a nice little old lady who sits quietly in the corner, doesn't bother anyone, joins in family meals etc. There is no awareness of lack of mobility meaning they can fall on a flat surface, let alone with a trip hazard or toys around, the 24/7 nature of caring for someone with dementia, the potential for violence, dealing with double incontinence, the how to get them washed and dressed when no longer mobile.

I hear this all the time from my mother.’ I would have never seen your nana be put in a home’ Yes she bloody would. She did diddly squat for her while she was alive. Everybody who puts a relative in a home is awful according to her. I get it, she is projecting her own fear and I am sympathetic because let’s face it I might feel the same one day. Sometimes there is no choice especially with complex needs. Not everyone is cut out for caring or has the space or time. Nobody should be made to feel guilty. You have to do what is right for your family and ignore the comments.

@KalaMush Snap. My parents said the same.

Fortunately, dad didn't live long enough to see this stage. I can't imagine how he would've coped with old age.

But my mother changed her mind. She also completely forgets what has happened over the years.

So she will often say to me "why are you worried about X".

And I'll point out all the times that X actually happened....and she doesn't remember. She doesn't have dementia or anything.

I also think she lacks the ability to realise what the impact is on me every time some sort of health crisis or hospitalisation happens.

Does your nan have capacity? Has she been moved into a care home against her will? If so, why would your dad do such a thing?

I would take the opinions of someone who is not yet facing the crisis of looking after a parent with a Linux of salt.

Lots of people have hypothetical opinions on what they would and wouldn't do, but find they choose to do something quite different when the situation becomes a reality.

Goodness knows! The people who criticise usually have no idea how hard it is to be a carer, especially for someone with dementia. The number one priority has to be keeping the person safe, and thus a care home is by far the best solution. Just ignore the critics.

I've had to ignore the opinions of a couple of people who did actually care for their parents extensively.

It took me a long time to accept it - but basically they were able to cope and I was not. I had to stop asking myself "why is it that they can manage and I can't?"

I think another reason we don't hear the stories that might be reassuring, is because many people simply do not want to talk about it.

I haven't been on this board for a while for exactly that reason! Mostly I try to forget about it.

My mother is in a care home, and I often wonder what we would do if she weren't. Historically, I suppose someone would have to not work and be the full time carer, with the decrease in income and lifestyle that goes with that. Perhaps if there were other family members nearby the load could be shared. Maybe in the past, with lower life expectancy and more children around to help, caring was less of a burden - though maybe it wasn't. After all, some younger adults spent years bedridden or incapacitated with TB or other problems. Perhaps if you didn't have substantial means it could lead to poverty and death.

There is often no choice.
But there is stigma because most homes are not great places to be.

@DuesToTheDirt My MIL spent years caring for elderly parents, whilst having children. It was I am sure a burden for her. There was no one to share the burden. No carers.

The number of people who have an opinion on this when it's absolutely 0 to do with them...

If people are rude enough to say anything, feel free to bite back.

I am very familiar with the family friends who haven't laid eyes on your loved one in years or decades, but who rush to visit as soon as there is a possible juicy drama change in the air. And then they are confronted uncomfortably with the reality of ageing and perhaps their own fragility, and they aren't very emotionally intelligent, so they project those fears outside themselves. I have to say that in her time my own mum was absolutely notorious for this herself. Happily for me, she ws always trying to make other people move into a nursing home, which certainly made it easier when the time came to recognise she was not able to live independently.

I am anticipating some barbed comments from cousins at my mum's funeral, because it has happened at other family funerals. I have adopted the southern American phrase 'bless your heart' which I like to think in a crisp RP accent is particularly cutting.

This is me, too. I have insisted.

The professional care and support therein is better for ALL concerned, without a doubt.